DNDi Head of Mycetoma, Dr Borna Nyaoke, appeared on Kenya’s most-watched morning programme, joining Day Break on Citizen TV for a wide-ranging half-hour conversation on neglected tropical diseases (NTDs). What makes these diseases “neglected?” Which communities are most affected? Is there any good news for NTDs?
About Dr. Borna Nyaoke
Dr. Borna Nyaoke joined DNDi in February 2018 and took on the Head of Mycetoma Disease role in January 2023. She is a clinical researcher and public health specialist.
At DNDi, Dr. Borna managed the first-ever randomized, double-blind clinical trial for a new treatment for mycetoma in Khartoum, Sudan. She also managed the ANTICOV trial in Kenya and Sudan, the largest clinical trial in Africa for people with mild to moderate COVID-19 to test new drug combinations in 13 African countries. She supported studies in antimicrobial resistance (neonatal sepsis and sexually transmitted infections) in Kenya and Uganda carried out by the Global Antibiotic Research & Development Partnership (GARDP), a joint initiative by the World Health Organization (WHO) and DNDi.
Dr. Borna has expansive experience in clinical research with previous work in epidemiological and simulated studies and Phase I and II clinical trials in HIV and Ebola vaccines.
Video Transcript
DAY BREAK: Welcome back and thank you for staying with us. In case you’re just joining us, you’re in time for the second interview that we headlined for you as we mark the end of this month of January—actually yesterday, the 30th of January. It is a time when the world just joins together to mark World Neglected Tropical Diseases Day. This is actually the fifth annual World Neglected Tropical Diseases Day, and this is a moment for us to take a scorecard and look at the journey and what we have been able to do as a country, as a continent, and as a globe in addressing some of these forgotten diseases that continue to be a burden to an important segment of the population.
“Neglected” needn’t exist – we have tropical diseases affecting neglected populations.
— Dr. Borna Nyaoke
I want to update you on what’s happening in our country. The Ministry of Health has launched the 2023-2027 master plan to eliminate at least 20 neglected tropical diseases in the country. Speaking in Mombasa while marking this year’s World Neglected Tropical Diseases Day, the acting Ministry of Health Director General says that by eradicating neglected diseases, the country will achieve one of the key Sustainable Development Goals of ensuring healthy lives and promoting well-being for all.
However, lack of sufficient funds poses as the major threat as the country needs more than 80 billion shillings to execute the plan. The government is now appealing to companies and philanthropies to align their CSR initiatives in order to assist the government in achieving this goal by 2027.
Indeed, that is Dr. Solatini Matende, who is heading the program for eliminating neglected tropical diseases at the Ministry of Health. Of course, we are going to be shedding some light on what he has highlighted: the journey that the country is currently taking to change the narrative.
Joining me in studio to have this important conversation is Dr. Borna Nyaoke. Since last year she has been heading the mycetoma disease department at the Drugs for Neglected Diseases Initiative. She’s a clinical researcher and public health specialist, as well as a medical doctor. I’ll dive into her profile if I had more time, but thank you for making time for us.
All right, so we just marked the annual World Neglected Tropical Diseases Day. As a country we had a lot of conversations about how to best address this group of diseases that have been forgotten. To start us off, tell us what stood out for you in this fifth celebration of World Neglected Tropical Diseases Day. What should be the most important takeaway, from your perspective?
DR. BORNA: I think the most important aspect we can highlight is the theme, which is “Act Now, Act Together.” That has been the biggest issue with neglected tropical diseases: small pockets of people do good work, but in silos. This prevents the work that’s been done from progressing rapidly. As we increase advocacy on neglected tropical diseases, understand them better, get more champions and collaborators interested in working on them, we can make progress in finding treatments and preventing these diseases.
DAY BREAK: Let’s talk basics, because today is about public understanding. We say these diseases are forgotten, there’s a lack of information. How would you describe neglected tropical diseases simply for someone who wants to understand what they are?
DR. BORNA: We find neglected tropical diseases in tropical areas of sub-Saharan Africa, Latin America, Asia. We call them “neglected” because we find them in poor, rural communities – what we’d call “neglected” communities. You’ll find other tropical diseases like malaria that have research and funding. Then there are neglected tropical diseases caused by bacteria, viruses, or fungi that present differently. They’re called “neglected” not because of low prevalence but because the populations affected are neglected. They can be as severe as malaria or tuberculosis. If treated at a clinic or medical camp, many can be managed.
DAY BREAK: I know there are about 21 diseases, but what are some common causes and symptoms we should focus awareness on?
DR. BORNA: Unfortunately we lump them together but they’re diverse. The similarity is they affect poor, rural areas. Some like elephantiasis cause swelling over time. Others like mycetoma start with a small thorn prick, then the leg swells. With dengue or chikungunya, you get fever, chills, joint/muscle pain in 3-7 days mimicking malaria.
So awareness includes educating patients in these communities and healthcare practitioners. I rarely encountered mycetoma until I joined DNDi. That doesn’t mean there aren’t mycetoma patients in Kenya – we found some during our West Pokot medical camp. It means patients and providers both need to know symptoms, how to diagnose correctly instead of assuming everything is malaria, and proper treatment.
DAY BREAK: Do you think misdiagnosis due to lack of provider awareness is a big issue?
DR. BORNA: Definitely education is key. In our Sudan mycetoma trial, we realized physicians couldn’t diagnose it. We provided screening, confirmation, assessment – many thought mycetoma was cancer from muscle/tissue/bone impact. Proper diagnosis was essential.
Here the Ministry of Health makes it difficult to access antimalarials without confirming infection. Community and hospital practitioner awareness of other tropical diseases, symptoms that mimic malaria, and treatment is increasing.
DAY BREAK: You managed the first clinical trial for new mycetoma treatment in Sudan. Tell us about this project.
DR. BORNA: Mycetoma is considered “neglected even among neglected tropical diseases” since no new treatments since the 1800s. Current treatment is the antifungal itraconazole – 2 tablets twice daily for a year, low cure rates, high recurrence/amputation/death risk. We collaborated with ASJ Pharmaceuticals in Japan and Mycetoma Research Center in Sudan starting a trial in 2017 using Eisai’s fosravuconazole – once weekly for a year, safer, and better cure rates.
We worked on Sudan registration given the good clinical trial data but, with the political situation, unfortunately faced delays.
DAY BREAK: That brings up a key challenge – lack of funding for research and access to treatments. How does your organization address this?
DR. BORNA: We understand pharmaceuticals are profit-driven – 10-20 year, high-cost R&D for these neglected patients doesn’t make business sense. DNDi secures donor funding to conduct trials with drug companies without their financial burden. If trials succeed, medications get registered locally through health ministries and WHO to enable access. Companies benefit in other ways – from the molecule’s success to contribution to global health goals.
We collaborated in the DRC for a new oral sleeping sickness treatment that transformed patient experience. Without the need for hospitalization and painful injections, providers can diagnose and treat in rural areas now. We aim for this impact.
DAY BREAK: Any similar success stories in Kenya?
DR. BORNA: Great news on visceral leishmaniasis work in West Pokot County. New oral treatment regimens – miltefosine and paromomycin – added to national guidelines help many patients.
DAY BREAK: Let’s talk stakeholders. Who are critical to accelerate progress and eliminate more neglected tropical diseases? What should they do?
DR. BORNA: Stakeholders start at the community level – leaders and influencers spread the word on availability of diagnosis and treatment to encourage people, who often hide disease to avoid cultural stigma. Educating healthcare practitioners fights assumptions that unfamiliar symptoms are caused by more common diseases versus neglected tropical diseases.
Ministries of Health implement WHO neglected tropical disease roadmaps, set national elimination goals and register global progress and gaps to drive accountability. Regional cooperation also grows – countries exchange effective interventions and methods. Overall advocacy removes the “neglected” from these diseases by spurring funding, research, interventions and preventatives.
DAY BREAK: This year’s theme centers around unite, act, eliminate. What’s your takeaway, personally?
DR. BORNA: “Neglected” needn’t exist – we have tropical diseases affecting neglected populations. Universal health coverage must ensure rural areas and conflict zones get healthcare access. When populations aren’t neglected, we remove diseases’ “neglected” status and provide people-centered interventions for impact.
DAY BREAK: Thank you for your time and insights. That was Dr. Borna Nyaoke discussing neglected tropical diseases and the path to eliminate them. My name is Safina, I appreciate you joining us – have a good day.